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  • Writer's pictureRuss Newton

The downside of ALS.



ALS is insidious. It steals from you every day. Every single day. I lose some ability. It is like growing up in reverse. I am losing some skill never to return.

Currently I cannot talk.

Cannot eat.

Cannot walk without tripping.

Losing strength.

Having a harder time every day buttoning my pants. I stop wearing button shirts months ago.

Having increasing difficulty breathing.

I bite the side of my mouth and tongue at least ten times a day.

I drool uncontrollably despite the medicine I take to stop it. The medicine that makes me constipated. Which necessitates another medication for that.

Breathing is the worse symptom I am having. It is getting harder and harder every day.

I can't swallow any liquid without a complex process of taking a small sip, get that to go down, then swallow a few sips while the passageway is open of whatever I am drinking.


And those last two are currently the main things that I am losing ability on every day now. And no matter how careful I am, I always end up choking a little bit.


And let’s write about talking. It was my strength for the most part. Sure, I used to talk too much but I loved telling stories and analogies and conversation with people. It seems particularly cruel to me to lose that ability. And my second love. Eating. Boy do I miss eating. Lasagna, pizza, Steak, Seafood, vegetables Fruits. You name it, I liked to eat it. But no more. Now I get to inject into my stomach twice a day a “Jevity Complete Balanced Nutrition with Fiber” Doesn’t that sound yummy? Not. In fact i forget to eat all the time now as I don't get hungry.


Now I speak via an app on my phone. And it is workable but frustrating. Every time I think of something to say, once I type it, the conversation has moved passed it. Frustrating and no one’s fault but ALS.


What I am trying to say is the joy of living is leaving my life a little bit at a time. And there is not much left at this point. So here is my new plan. I am going to become a hermit when I return to Wisconsin. I still enjoy reading the paper every day so I will do that. And reading books and watching TV. And playing stupid games on my computer. I don't have to go out shopping for food, my food is shipped to me by Fed Ex. My medicine comes by UPS. I have Amazon for everything else. And I can pay all my bills online. Then all I must do is wait until I have no joy left and take the next logical step. I am not depressed. I am just realistic about what the rest of my life will be like. I appreciate all that many of you have done for me. But it is so painful for me to not be able to keep up with the conversations and not able to eat. It just flat-out sucks. So, this seems to be the best move to me. Remove the painful parts of my life I used to enjoy so much

I will still write back to anyone that messages me, emails me or sends me a letter. In fact, I would enjoy that very much. You can only watch so much TV, read a book or newspaper or play a silly video game. So please, write me. It feels like a more even way to communicate to me now. Thank you all for the welcome you have given me on my travels It was really great to see everyone and get a chance to say goodbye.


Farewell world, hello Hermitage!

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6 Comments


Tom Wiensch
Tom Wiensch
Sep 03, 2021

Russ, it makes me so sad to read this. But the positive attitude that you continually display is truly an inspiration.

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Russ Newton
Russ Newton
Sep 03, 2021
Replying to

Thanks Tom, I had a choice many years ago how to approach life. And i decided at a young age to be optimistic. And it that counts for anything, then I should last longer with ALS then with a negative attitude. But if I don't, I will still be much happier so that is a good outcome as well. Though once in while like in this post I do have dark thoughts.

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gdtomaske
gdtomaske
Aug 29, 2021

Russ, you are moving deliberately into a place that we all will be traveling to and in this sense, you are not alone, you are showing the rest of us the way. You have lost your voice but the truth is the words you spoke are still cherished by the rest of us and I cannot tell you how many times I wish I had had the a voice as plain spoken as yours to wrap words around my own emotions. As for food, well, I can’t help you there but you did enjoy the fruits of this world and I pray you will enjoy of the fruits of the world to come.


Via con Dios my friend and remember…

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Russ Newton
Russ Newton
Aug 29, 2021
Replying to

Gordon, As always too kind! Thank you my friend. Just trying to live life wide open as I always have! Thanks bud! Russ

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mgray1
Aug 28, 2021

Russ, when you are back if there is anything you need let me know. I gave your mail at the ready for when you get back as well. I have my girls ready to do more artwork at any time!

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Russ Newton
Russ Newton
Aug 29, 2021
Replying to

Matt,


Thank you so much! I really appreciate all you and your family are doing for me. Thanks! Russ

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